Gleevec?

I have a follow up visit with Dr. Khanna after the echo and CT scans are finished. He calls me 2 days before to discuss the results. I'm wondering, why is he calling me now - don't I have an appointment in 2 days?

Dr. Khanna tells me that I have active lung disease that needs to be treated right away. He tells me there is an existing medication that has a horrible side effect profile. It can kill your ovaries and cause infertility. Good lord, is that a side effect? It's also a carcinogen and can cause bladder cancer down the road. Dr. K says he wants to enroll me in a clinical trial for another med that has been used on leukemia patients. He called me in advance so I could research it. The docs believe it is could be beneficial to scleroderma patients due to the mechanism of action. It is an immunosuppressant called Gleevec and comes with it's own fun list of side effects - a good chance of nausea, vomiting, diarrhea, fluid retention around the eyes and legs (what the...?).

Kind of ironic - aside from shortness of breath, fatigue and changing skin, I don't feel all that sick. Yet, I am going to be taking a med that is going to .....make me feel sick.

At the appointment 2 days later, Doc assures me that if the side effects are too bad I can drop out. I reminded him that I gotta look good come October 26th so this "fluid retention around the eyes" thing is a worry. He said we can probably treat that with a diuretic if we need to. Whew!
So, I sign all the consent stuff and learn that the medication is free AND I'll be given $25 each time I go for a visit! That should just cover the parking charges at UCLA...

I just have to get a bronchial scope thing (there's some other word for it, but I forget) done, which is scheduled for 8/27. Sounds like another fun process - I have to be sedated for it! After that, I'm good to go to start good ol' Gleevec.